Gabby Klein considers the efforts Dr. Enlander has gone to to ensure that the reality of ME/CFS is presented to the world at large, and gives us an insight into his opinions on some current issues, including an update on the formation of an academy for ME and CFS physicians, announced recently at the Institute of Medicine meeting during his presentation…

enlander_derek_3

Dr Derek Enlander

I am honored to be presenting an interview with my own ME/CFS clinician, Dr. Derek Enlander. He diagnosed my disease 10 years ago when all other doctors were either stumped or unbelieving of my severe symptoms.

He is a brilliant clinician, evidenced by the fact that he started medical school at the age of only 17!… Read More

19 comments
Jody Smith considers how things we consider beautiful can help feed a starving soul ...
 
pixabay-woman-celloI spent every day for years propped up on pillows on my bed. I could see out my window to the left. My messy closet was to the right. Looking straight ahead I saw a television, a messy desk and a dresser.
 
Then one year on a rare Christmas shopping expedition, my daughter Rachel the Chauffeur was with me in a department store, and as we neared a bunch of prints (pictures not fabric) I said in passing, “That’s nice.” I stood and looked for a moment at a scene of what felt like a French village.… Read More
45 comments

The WHO ICD featured recently in an online article (since withdrawn), which heightened patient concern over what might happen when the current ICD-10 is finally revised. N.A.Wright provides a timely summary of this international classification system, considers some of the issues surrounding the existing and proposed listing, and calls on our advocacy organisations to get involved…

World Health OrganizationThe World Health Organization (WHO) is responsible for producing an International Classification of Diseases – the ICD.

An important document in standardising epidemiological data, the ICD has often been a source of confusion in discussions about ME/CFS.

The ICD is subject to continuous review with updates published annually and major revisions are intended to be produced every ten years.… Read More

21 comments

Andrew Gladman considers the importance of dysautonomia and several of its component parts — neurally mediated hypotension, inappropriate sinus tachycardia and postural orthostatic tachycardia syndrome — all recognised as problematic comorbidities by ME/CFS patients …

Orthostatic intolerance is a frequent problem for those suffering with POTS.

Orthostatic intolerance is a frequent problem for those suffering with dysautonomia.

Dysautonomia, most commonly experienced as postural orthostatic tachycardia syndrome (POTS), is a recognised comorbidity of ME/CFS. There is little debate surrounding this and much research literature exists to support such an association.

Understandably, considering the relative frequency with which some or all of the symptoms are reported, much discussion has occurred among patients, clinical experts and researchers, as to what might be causing the condition, and what role it might play in our understanding of ME/CFS.… Read More

14 comments

It has been seven years since Jody Smith began seeing her Naturopath Doctor. Time then for a brief reflection on the extent to which a variety of interventions may have helped move Jody forwards in her own battle with ME/CFS…

bio-kelly

Naturopathic Doctor,
Kelly Upcott

February, this year, marks seven years since I began seeing my naturopath, Dr. Kelly Upcott. For six and a half years, I saw her every month, and if, for some reason, there was five or six weeks between appointments, I would begin to deteriorate rapidly. But all that changed last summer.

Circumstances prevented me from getting in for two months, and we were both pleased to find that there had been no setbacks.… Read More

32 comments

Gabby Klein provides a useful summary of what was a very important, and quite extensive, IOM open meeting. US Government representatives, patient organizations, advocates and individual patients all made formal presentations…

Chair, Dr Ellen Wright Clayton,  Committee for Diagnostic Criteria ME/CFS

Chair, Dr Ellen Wright Clayton,
Committee for Diagnostic Criteria ME/CFS

The Institute of Medicine (IOM) has been formally engaged by the US Department of Health and Human Services (HHS), to complete a review of diagnostic criteria and available evidence, for the purpose of making recommendations for a new clinical definition for ME/CFS, one that might also result in a new name for the disease(s).

The first open IOM meeting was watched by ME/CFS stakeholders from around the world and representatives from our community made impressive presentations to the assembled committee.… Read More

10 comments

Simon McGrath recently secured an interview with the world famous Dr Ian Lipkin – a scientist who continues to believe that ME/CFS has a physical cause – to discover more about his plans for a major study of the gut microbiome and to find out why he’s asking the patient community for its support…

lipkin2

Dr W. Ian Lipkin has demonstrated a clear commitment to ME/CFS research. First came his study looking at Borna virus in the 1990′s, and then the landmark study that ruled out XMRV as a cause, and most recently we have heard about the huge pathogen and immune study – a vast collaboration with many key clinicians and researchers, including Dr Dan Peterson and Professor Jose Montoya.… Read More

278 comments

The Medical Advisor to the ME Association, Dr Charles Shepherd, writes about the importance of blood testing prior to receiving a diagnosis, explains what each test means including for children, and considers when new tests might be necessary…

Blood Tests - NHSHuman blood contains red cells, white cells, platelets and plasma. Red blood cells carry oxygen around the body – so a deficiency or abnormality will probably cause anaemia.

White blood cells help to fight off infections and respond to allergies. They are sub-divided into cells called basophils, eosinophils, lymphocytes and neutrophils – each with a slightly different function.

A rise in the overall number of white cells usually indicates the presence of infection or inflammation somewhere in the body.… Read More

59 comments

In the second and final part of Andrew Gladman’s journey, he finally receives the diagnosis that best seems to fit his symptoms, but as his health shows no sign of improving, he reluctantly decides to withdraw from his biochemistry degree and spend more time to try and reach an accommodation with his illness…

MH900341439It was early November 2012 and I found myself in a ragged state, to say the least. I’d been back and forth to the surgery countless times, and was now on first name terms with the receptionists. Yet the doctor’s own attitudes towards me grew increasingly infuriating – some even believing I was simply having trouble settling into university!… Read More

11 comments

The CDC multi-site clinical assessment of CFS/ME is now underway, and Bob took the opportunity to interview Dr Beth Unger, the lead scientist in charge. The outcomes of this significant study are likely to be widely influential and the means by which the CDC employ objective measures has become something of a hot potato, especially in relation to exercise testing…

Elizabeth, R. Unger, PhD, MD Chief, Chronic Viral Disease Branch

Elizabeth, R. Unger, PhD, MD
Chief, Chronic Viral Disease Branch

The CDC department that oversees chronic fatigue syndrome, under the leadership of Dr Beth Unger, has begun a large study using data from 450 ME/CFS patients, collected at seven well known clinical sites across America (see below).… Read More

89 comments

Life on a Dead-End Street

January 27, 2014

Jody Smith considers how her life had become one of necessary isolation, and how a chance encounter with new neighbours and the possibility of having them in her home, led to feelings of fear and insecurity. Looking back she reflects on how these concerns have slowly improved and how the occasional visitor is now more welcome…

pixabay-streetlight-2I live in a cul-de-sac that contains half a dozen houses. And, as I think about it, living on a cul-de-sac – or dead-end street – strikes my twisted sense of humour as being a great, though unintended, picture for living with ME/CFS.

Its after dark, and through my living room window, I see the headlights of any cars driving in or out.… Read More

9 comments

The IACFS/ME Spring Conference promises to be one of the main events of 2014, and with ‘early bird’ tickets for patients still available, Searcher provides an overview of what we can expect, as well as interviewing the IACFS/ME President, Dr Fred Friedberg, before preparing to attend the conference herself…

golden-gate-bridge-3738The 11th biennial IACFS/ME conference will be held in San Francisco at the Parc 55 Wyndham Hotel from March 20-23, 2014. 

It was last held in Ottawa in 2011, at a time when the focus for research, and of patient interest, was perhaps directed at XMRV.

Much has changed since that time, with the focus moving to new areas, so we expect to hear more of these developments – especially given the impressive line-up of speakers.… Read More

7 comments

Andrew Gladman takes a brief look at what cytokines are and how they might relate to our disease – exploring some of the research that is indicating their involvement in disease pathways…

12345

Interferon Alpha By Nevit Dilmen
[GFDL or CC-BY-SA-3.0]
Wikimedia Commons

In recent years ME/CFS research has turned the spotlight on several areas, such as autoimmunity, the cardiovascular system and the autonomic nervous system.

While it is fair to say that much remains unknown about their function and behaviour, cytokines have a role to play in all these areas and they are being talked about with increasing regularity.

What are cytokines?… Read More

15 comments

It has been a devastating twelve months for Andrew Gladman after he took well meant advice to ensure his vaccinations were up-to-date. He was ready to begin study at university, but the vaccines seem to have led to some very obvious and bad reactions that did not immediately resolve. It appears that this trigger, not uncommon among a significant minority of those with an eventual diagnosis of ME, and perhaps his reaction to the treatment with antibiotics, are what has led to Andrew’s subsequent ill-health and to his later diagnosis. In his own words, Andrew takes us through this difficult and unexpected period in his life…

MH900341439It’s always said that time flies when you’re having fun, but for me this last year since the onset of my illness has really flown by, and I can honestly say that it has not been fun.Read More

9 comments

Bugs are not all bad, in fact many in our gut are essential to good health, but problems with these could help explain some diseases, possibly even ME/CFS. Simon McGrath takes an introductory look at the Microbiome – an area that is fast becoming a focus for several research teams looking at our own illness…

Home for gut microbiota; few survive in the stomach but it flourishes in the colon

Home for gut microbes; few survive in the stomach but they flourish in the small intestine and dominate the colon – 60% of the dry weight of poop is bacteria.

The microbiome – the bugs that live in our gut and on our skin – has become a hot topic, not least because of the coverage of ‘faecal transplants’ that apparently cure life-threatening infections by restoring the microbiome with poop from healthy donors.… Read More

38 comments

Mark Berry, Acting CEO of Phoenix Rising, presents our Annual Report for 2013

PhoenixRisingLogoPhoenix Rising’s board of directors and volunteers were faced with a daunting set of challenges at the start of 2013, following the departure of our founder Cort Johnson. With only a skeleton staff of volunteers, the tasks that lay ahead of us were to stabilize the organization’s finances and administration; to recruit a new team of writers, editors and publishers to provide content for the website; to continue running the world’s largest ME/CFS forums; and to preserve Phoenix Rising’s reputation as a reliable source of information and a well-moderated meeting point for the worldwide ME/CFS community.… Read More

17 comments

By Penny Clare

Penny-start

“I stayed alone in the darkness and the impossible became possible” – anon

Penny-sheet1

The bedsheets take flight I

I was mostly confined to bed in a dark room – for years, and years, and years.

At some point, in this isolated sea, I started taking photos. From my bed, in the dark. And my relationship to my illness and circumstances took on a different meaning and found creative expression. It was my way of creating movement.

The vast majority of my photos were shot with no artificial or natural daylight, though daylight was occasionally gleaned from a small opening or crack in the curtains or door.… Read More

52 comments

Ahead of the December 23rd deadline for public comment on the proposed IOM panel to create clinical diagnostic criteria for ME/CFS, Gabby Klein reviews the continuing opposition to the HHS/IOM Contract and the more favorable response from some ME/CFS organizations, and offers her personal take on the controversy.

HaveYourSayWhile the mounting questions regarding the HHS/IOM contract have continued to grow and remain unanswered, the Institute of Medicine has been forging ahead with its work to create clinical diagnostic criteria for ME/CFS. On December 3rd, the IOM revealed a list of fifteen provisional panel members with a twenty day window for public comment.… Read More

17 comments

Ryan Prior recalls why he and Nicole Castillo decided to make a movie about ME/CFS, and explains why they’ve now decided to form the Blue Ribbon Foundation as a new non-profit organization

BlueRibbonImage1A year ago, I wrote a story for USA Today about my experience with ME/CFS that changed the trajectory of my life. The response to my story taught me just how neglected the ME/CFS patient population is. My plan after graduating from the University of Georgia had been to write about politics. I thought I would move back to Washington to work as a political journalist or as a speechwriter for a congressman or senator.… Read More

6 comments

A concluding article for the ‘In Brief…’ Series, summing up the previous articles which attempted to explain the science behind fairly common topics and exploring how they relate to ME – by Andrew Gladman.

800px-Collier_conclusionOver the past few weeks and months I’ve been busily researching, evaluating and writing the series of articles under the subheading of ‘In Brief…’. The original idea behind the articles came partly from frustration and partly from personal interest in the subject areas. From a personal standpoint I became sick just over a year ago and after roughly 6 months I landed a diagnosis of ME/CFS, forcing me to withdraw from university due to the plethora of symptoms I was and still am experiencing.… Read More

3 comments